Thursday, August 21, 2008

Comparing the Presidential Candidates' Views on Autism

The Autism Society of America recently invited the presidential candidates to submit statements about their views on autism and posted those statements on the ASA website. Unfortunately, John McCain's response consists mainly of alarmist rhetoric, ignorant stereotyping, and bogus statistics. Here's an excerpt:

More than one in 150 children born today will be diagnosed with autism. It now affects almost 1.5 million Americans, and costs the U.S. $ 90 billion each year. Autism has a significant impact on families -- bankruptcy and divorce rates of parents of children with autism are well above the national averages. Worse, there is no quantifiable way of determining how many future doctors, lawyers, teachers, or scientists autism has taken from society. Autism is a national crisis and the federal government must respond accordingly.

I've written before about how obnoxious it is when politicians ignore the social and economic contributions of people with disabilities and reduce human lives to costs, so I won't go into detail on that point. Rather, I'll move on to discussing McCain's uncritical acceptance of the totally groundless urban legend about autism destroying families. Susan Senator recently wrote a blog post on that topic—take a look at her comments to find several cites to research studies establishing that families with autistic children do not have higher than average divorce rates. This illustrates McCain's approach to national policy decisions: when there aren't any statistics to support a popular prejudice, just make something up.

And yup, he just gets worse when he goes on to portray autism in medieval changeling terms, as stealing children from society. Those of us who are autistic and are employed in professional careers such as those McCain mentioned, or who have autistic professionals in our families (both, in my case), know how wrong and harmful it is to perpetuate the stereotype that we are incapable of professional employment. Apparently McCain is clueless as usual on this point, though. He clearly never considered what happens in the real world as a result of that prejudice when an autistic teenager wants to enroll in college preparatory classes, or when an autistic freshman tells his university advisor that he is considering a pre-med or pre-law major, or when an autistic student enters her senior year of college with high marks and applies to a graduate program, or when one of us emerges from the comparatively sheltered environment of academia and applies for that first professional job.

Barack Obama, on the other hand, made it clear in his statement on the ASA website that he understands the importance of ending disability discrimination. After a paragraph discussing research and education, Obama wrote:

I also support the adoption of a comprehensive plan designed to provide lifelong supports and resources to Americans with ASD and other disabilities. This plan would ensure that their needs are met by:· Reclaiming America's global leadership on disability issues by becoming a signatory to—and having the Senate ratify—the UN Convention on the Rights of Persons with Disabilities;· Providing Americans with disabilities with the educational opportunities they need to succeed.· Ending discrimination and promoting equal opportunity· Increasing the employment rate of workers with disabilities, and· Supporting independent, community-based living for Americans with disabilities.

52 Comments:

There isn't any prejudice impeding academic pursuits of autistics. Probably not of professional pursuits either. The ones who enter into and succeed in high academic programs do so because they had the aptitude and necessary abilities, not because they escaped prejudice.

Many autistics don't even reach the point of applying for such pursuits because of the level of disability they have. That's a reality that I would hate to see hidden. If one isn't being accepted into such programs, it's because they don't have the stuff necessary to be accepted or there are too few seats.I think it would be horrific for autistics fortunate enough to be able to be such high level professionals, to complain about the dissemination of the truth that many autistics won't be able to hold great jobs.

david, how about I take some of your iq points? I seriously could use some because of my inabilities. How much "prejudice" could you have experienced considering you have accomplished an education and a career? I'm someone who knows firsthand what it's like to not succeed and to experience the reasons why I didn't.

It's interesting that those like you mock others over a real or made up lack of intelligence, and claim they care about those with mental disabilities. I wonder how such people can be trusted to bring decent attitudes towards those with such disabilities, when they link low character and detestable traits with mental weakness in their insults.

It's time to face issues of mental disability head on instead of people putting their heads in the sand because of the touchy situations. I don't think such important issues should be entrusted to and explained by those on top who are so fortunate, and are consequently out of touch with the obstacles dealt with by the least able.

Lurker, I had to change city to get an education and I'm on my third university. The reasons for the change was a lot of harrasment (at the first university and around town, the second university was not bad in that regard) and absolutely NO support from the autority to try and solve the problem.

currently, it's much better, I work for a team of researchers who are aware of my problems and they are very supportive.

Look he is a coconut and that is all there is too it, a product and a defender of US hegemony and an ultimate threat to the survival and peace of humankind.

Bugger what he thinks about autism or anything else ,our mutual survival is decided in much else besides. The guy is part of the whole antichrististic.

He is part of the great Satan and the more he speaks the more his master is revealed.

You can't live by him ultimately but we all may all die by him.

You have to be more than a token minority to really understand where the future lies.

Well nuclear armed or not the USA is the past, Nuclear armed or not, Russia is the past. Nuclear armed or not, China is the future and do you know why?

It is economics not ideology iand if you started figuring out the way that economics is excercising a complex ew hegemony it would be surprising, cos you have to ask in a command economy who is commanding?

Maybe you with your Air conditioning and Ipod culture

Yeah never mind where the coffee comes from or who sews your reeboks think about those computer chips and consider whether the great Obama or the equally incompetent McCain are really agents in this world

Alain, I realize those offenses should be dealt with by law enforcement and/or whatever the appropriate authority is. If they aren't doing what they're supposed to be doing about harassment, someone should hold them accountable for that.

But that kind of problem can't be made the center of the general issues about the inability of autistics to gain high education and employment. If prejudice is deemed to be the only problem, people may think that the only impediment autistics face is other people being mean to them, and that all of them are able do great in academia and in professions, while that is not the truth.

Issues like harassment should be discussed specifically side by side with the other issues, instead of just referred to in the rhetoric about the general issues they have to deal with. It's not acceptable to obscure the significant impairments that have precluded many autistics from being able to have academic and professional pursuits.

You said: There isn't any prejudice impeding academic pursuits of autistics.

You also said: Probably not of professional pursuits either.

Wrong. On both counts.

My first attempts to get into the University of Helsinki included one inquiry which was met by the question (levelled at my then-wife) "How does he think he can study to become a psychologist with all those things wrong with him?", when she asked (in my behalf, since I did not speak Finnish well enough at the time). That is pretty clear evidence that they had assumed pretty much total non-competence at study. Similar shit happened when I tried to get into the psychology department at the University of Jyväskylä: dismissal out of hand. In both cases I had declared my support needs, in terms of my diagnoses.

Interestingly enough, the University of Birmingham held no such prejudices - preferring instead to accept my diagnosis as an offered entry qualification along with the other evidence of ability that I offered (all of which evidence was available - along with my degree certificate - to the person at the University of Jyväskylä).

I told you to grow your own. So, go do that. And no, I'm not mocking you. Any more than you're mocking autistics who do encounter prejudice in making any headway in their academic careers. Just because you haven't met any of us, that doesn't mean we don't exist.

You said: I'm someone who knows firsthand what it's like to not succeed and to experience the reasons why I didn't.

So am I. Which is why these issues went to law. One issue was to do with who could define my support needs (my support providers at the time merely supposed that I would never be able to work, because I'm autistic, without taking into account that I was actually more qualified than anyone in their fucking office!). In my postgraduate training, we were taught how to recognise prejudice. So, I'd suggest that you leave off making claims you clearly cannot support ("There isn't any prejudice impeding academic pursuits of autistics. Probably not of professional pursuits either. The ones who enter into and succeed in high academic programs do so because they had the aptitude and necessary abilities, not because they escaped prejudice.").

You said: when they link low character and detestable traits with mental weakness in their insults.

And you don't think that your denial of the prejudice that many of us have experienced has actually happened constitutes an insult? Eh?

Move on. You've lost already. And I'm beginning to see what brings about your experiences of failure: refusal to accommodate new information into you schemata, especially when it contradicts your own prejudices. Or as Kelly would have it: refusal to subsume into your own construct system the new contructs offered by the results of some new experience (i. e., that of actually having encountered - up to now - at least two people whom you basically claimed do not exist!).

david, those sound like unusual situations. But such things are changing and have changed, at least where I am from. I strongly doubt that qualified people with autism are being turned down from universities all over the place, considering I have heard about disability programs at colleges and things like that. The college I went to most likely doesn't have such prejudice. I'm lucky I made it through 4 years of college with my disabilities.

Yes you were mocking me. Not that I'm complaining, but look at how you talked to me. Don't act so clueless. Why must those like you deny basic things? I wonder what support needs you possibly needed that you were telling all those universities about, considering your high qualifications.

I'm impressed about how you imply that my failure is due to me being a mean prejudiced person. There is lots of information that I can't accommodate, which is because I have a weak mind and can't figure things out and how to maneuver circumstances. I lack success because I lack ability, which is a truth for quite a few others, and a reality that so many dread discussing or dealing with.

But I think I know some things are way overstated or doubtful when I see them, when applied to general circumstances. I'd love to grow some IQ points, but I can't, and nobody is helping me with that, especially those like you. There would be no focus on helping to end mental impairments for those who only could dream of high education and professions, if those like you dominated all of the rhetoric.

He served 2 terms in the state senate of Illinois. He is a civil rights attorney, right?

Why is that theire are two class action suits in Illinois in that a person with any type of a disability must reside in an institution to get servives? One of the lawsuits is by people with physical disabilities and the other other lawsuit is people with developmental disabilites.

But the above might not be good enough!

Illinois is building an another institution for warehousing. Why you might ask?

It's easier for all the employees to be in one place then scattered in helping people in their own homes. Illinois finds it better to put the employees in one place over the needs of the people.

Obama had a tenure in the state senate and now is a federal senator of Illinois.

Might want to research where Illinois is ranked for services. Might want to look up the pretty picture for the new institution that they are building. Might want to find out how many institutions exist in Illinois.

And you might want to think about just how good a civil rights attorney Obama is.

"david, those sound like unusual situations. But such things are changing and have changed, at least where I am from. I strongly doubt that qualified people with autism are being turned down from universities all over the place, considering I have heard about disability programs at colleges and things like that."

You obviously don't live in Finland then. It happens here. I read many accounts on our national forum of this sort of prejudice, and so I can tell you that it is widespread here, based on medical misinformation. Autistics in Finland are finding this a serious problem.

"The college I went to most likely doesn't have such prejudice. I'm lucky I made it through 4 years of college with my disabilities."

You were actually very lucky. Such programmes quite frankly do not exist here. It would be much harder for someone experiencing most sorts of learning difficulties to survive university or polytechnic here: I've done assessments which have gone nowhere for people (one being a subject of concern to a polytechnic principal, in that the polytechnic in question does not want to support learners who experience difficulties in studying).

"Yes you were mocking me. Not that I'm complaining, but look at how you talked to me. Don't act so clueless. Why must those like you deny basic things?"

Actually, I was bollocking you.

"I wonder what support needs you possibly needed that you were telling all those universities about, considering your high qualifications."

Plenty, actually. And - whilst it would have been impossible to get them in Finland - my UK university was willing to go some way to making sure that I was not disadvantaged unduly.

"I'm impressed about how you imply that my failure is due to me being a mean prejudiced person."

I didn't meantion 'mean'. I mentioned prejudice, and queried the idea of bigotry because - well - that is actually how you come across.

"There is lots of information that I can't accommodate, which is because I have a weak mind and can't figure things out and how to maneuver circumstances."

And your college never supported your developing this sort of skill? Because, if not, they didn't really do you anything of a service.

"I lack success because I lack ability, which is a truth for quite a few others, and a reality that so many dread discussing or dealing with."

But abilities can be developed. And a good college has specialist education professionals who know how to provide the support for such development.

"But I think I know some things are way overstated or doubtful when I see them, when applied to general circumstances."

You didn't pick up on your own statement, though.

"I'd love to grow some IQ points, but I can't, and nobody is helping me with that, especially those like you. There would be no focus on helping to end mental impairments for those who only could dream of high education and professions, if those like you dominated all of the rhetoric."

Firstly, come across as an arsehole, and that is how people will relate to you. Especially in these circles, since we get some bloody unsavoury charachters coming here and generally being bastards for the sake of it.

Secondly, get your abilities tested by someone who goes beyond the numbers the tests give, because the numbers are secondary to how they are got. If someone can investigate what doesn't happen for you, there's a better chance that you can secure support in order to 'grow that IQ'.

And - yes, I did just help you. What you do with that help is up to you.

To the anonymous commenter who asked why Illinois (and other states) require many people to live in institutions to get services: This is because of a structural bias in the Medicaid program, which provides funding to states for institutional care, but has failed to provide adequate funds for community care.

Obama is a co-sponsor of the Community Choice Act, which would change the Medicaid laws to allow funding of community housing and other services. However, as I discussed in a recent post, John McCain opposes the Community Choice Act because he thinks it would be too expensive to provide the services needed to enable people with disabilities to live in the community.

David: Abilities can indeed be developed, if those who provide services are willing to do so -- that's a well-stated comment.

Illinois is ranked 49th! If your autistic its straight off to the nursing home you go til you can get into one of them beautiful institutional settings for the rest of your life!

Give me a break!

Obama had a tenure in the State Senate before he realized how much more good he can do on the U.S. Senate Floor and now on to the Presidency. Definately a man with a vision for the disability community.

Would you like the links for class action suits as well?

from Ragged Edge

Despite the high court's ruling, Illinois ranks higher than all but five other states in its rate of institutionalization of people with developmental disabilities. Conversely, the state spends less on community-based services than all but four other states. As a result, thousands of people who desperately want to live independent lives have no choice but to suffer under inadequate, under funded community services. Many have no real choice but to give up their freedoms in order to receive the care they need.

http://www.raggededgemagazine.com/de...ok/000489.html

Despite the fact that over 20 years of scientific research conclusively shows that people with significantdisabilities are better off in small, family-scale homes, the State of Illinois continues to spend hundredsof millions of dollars to keep these individuals in large, outdated, expensive institutions.The State of Illinois ranks dead last in supporting people with significant disabilities in communitysettings. Rather, 70% of residences for people with disabilities are for 7 or more people. 1In 2006, Illinois spent over $626 million on institutions to operate 9 state facilities and approximately250 private institutions. Over 2,700 individuals are housed in state facilities and 5,272 are placed inprivate institutions of 16 or more people. Total institutional population in Illinois is more than double thenational average. 2

http://www.realchoiceinillinois.org/...inois_2008.pdf

Here's an interesting perspective from Illinois. They want to lower the unemployment rates there and a good way would be to "re-open one of their institutions" that was closed. What's more important? Lower unemployment and create new job opportunities for the citzenry of Illinois and at the same time a "wonderful living arrangement warehouse" for the developmental disabled citzenry there. I guess this plan is a "kill 2 birds with one stone" theme.

Because jobs are being held out as the primary reason to reopen Lincoln Developmental Center , it should be noted that the community-based care industry is a considerable statewide economic engine that employs thousands of people. Therefore, we feel the “jobs argument” is not valid, especially when people’s lives are being devalued. People with disabilities are not material goods, whose “manufacture” entitles people to employment.

Donna, you may want to repost your links; they are truncated and do not work.

Reopening institutions to create jobs strikes me as very similar to the reasoning of those who argue that wars are good because they create jobs in the defense industries. They're ignoring the social and economic costs of diverting that labor from more worthwhile purposes, such as improving education and technology, as well as ignoring the damage inflicted on the casualties.

Civil Lawsuit One (deals with Illinois "placements" into nursing homes way before a person is elderly....

Class-action lawsuit seeks community services for persons with disabilities confined to nursing homes.

On August 22, 2007, A group of Illinois residents with disabilities asked a federal court to force state officials to comply with the landmark Americans with Disabilities Act (ADA), adopted seventeen years ago. Five individuals with physical disabilities living in nursing homes sued Illinois State officials asserting that the state has failed to comply with an eight-year-old U.S. Supreme Court decision ruling that unnecessary institutionalization is discrimination under the ADA. The lawsuit filed in federal district court in Chicago seeks an order permitting people with disabilities in Cook County to access long-term care services in their own homes or in community-based settings rather than nursing homes. The class-action lawsuit charges that wharehousing persons with disabilities in nursing homes segregates them from their own communities and deprives them of economic, social, and educational opportunities, as well as their privacy and dignity.

"I just want an opportunity to make my own choices about how I live,"said plaintiff Lenil, who currently resides in an Oak Park nursing facility. "In the nursing home, I have to eat when they tell me to. I have to go to bed when they say it's time and I can't visit my family or friends without permission."

According to a database maintained by the federal Center for Medicare3 and Medicaid Services, more than 31,000 people live in nursing homes in Cook County. In six of the ten largest nursing facilities, housing hundred of people each, the majority of the residents are not elderly. Up to 60% of non-elderly nursing home residents, all of who are people with disabilities, in Cook County, and nearly one-third of elderly residents, would prefer to receive long-term care services in their own homes, apartments, and communities instead of a nursing facility.

The plaintiffs are represented by three public interest agencies-- Access Living, Equiop for Equality, and the American Civil Liberties Union of Illinois--, as well as Stephen F. Gold, a national disability rights lawyer based in Philadelphia, and the law firm Ross, Dixon & Bell, LLP, which is representing the plaintiffs and the class on a pro bono basis.

"The actions of the State result in unnecessary segregation of persons who would benefit from life in the community,"said Max Lapertosa of Access Living. "It is time for Illinois to reverse its trend of segregation and fulfill the right of people with disabilities to live in communities of their choice." Access Living was founded in 1980 as a community-based, non-profit, non-residential, cross-disability service and advocacy organization operated by and for people with disabilities.

This one is on behalf of people with developmental disabilities in the Illinois's institutions...

Illinois Residents Sue State for Violating Americans with Disabilities Act, Failing to Provide Community Services Historic class-action lawsuit filed on 15th anniversary of the ADA seeks reform of state's services for persons with developmental disabilities Download/View Documents Relevant to This Case

CHICAGO (July 28, 2005) --Fifteen years after Congress enacted the landmark Americans with Disabilities Act and six years after the Supreme Court of the United States held that unnecessary institutionalization is discrimination under the ADA, nine Illinois residents with developmental disabilities today sued Illinois state officials, seeking an order that would require the state to provide services within a smaller community setting, instead of segregating people in large private institutions. The class-action lawsuit filed in the U.S. District Court of Illinois charges that by warehousing persons with developmental disabilities in large institutions, the state deprives them of their fundamental right to pursue meaningful and productive lives.

"I want to live with friends in a small house or apartment and have my own room," says plaintiff Stanley Ligas. "I can do a lot of things on my own, and I want to be able to cook for myself." Instead, he has been forced to live in a large institution for the past 12 years in order to receive Medicaid services, despite his repeated requests to move into the community.

"I removed my son Isaiah from a private facility after his safety was put at risk and the facility was cited for medical neglect," says Lutricia Fair, mother and guardian of plaintiff Isaiah Fair. "By refusing to provide community services to my son, the state has abandoned me and many other families who do not want their adult children to be served in institutional settings. I hope this case will help my son and all the other people with developmental disabilities who want to live in the community."

According to the complaint, Illinois currently ranks 49th among states in its efforts to place individuals with developmental disabilities in small integrated community settings. Instead, Illinois' antiquated policies channel them into a system of approximately 250 large, privately-run congregate care institutions where more than 6000 of Illinois' developmentally disabled residents are currently housed. According to the plaintiffs, most of those 6000 individuals could thrive in small community-based residential homes. The complaint alleges that Illinois' failure to provide meaningful opportunities for community-based services violates the Americans with Disabilities Act as well as other federal statutes.

The plaintiffs are represented by four public interest agencies, Equip for Equality, Access Living, the American Civil Liberties Union of Illinois and the Public Interest Law Center of Philadelphia, and the law firm Sonnenschein Nath & Rosenthal LLP, which is working in this case as trial counsel on a pro bono basis.

"For far too long, the state of Illinois has relied upon large congregate settings to serve people with developmental disabilities and has refused to develop sufficient community living options," says Barry C. Taylor, legal advocacy director at Equip for Equality. "Because of the clear benefits of community living, the ADA mandates that people with disabilities live in the most integrated setting. This litigation was filed to force the state to do what it has failed to do voluntarily: comply with federal law and fulfill its obligations to the disability community." Equip for Equality is a private, not-for-profit entity designated in 1985 by the governor to administer the federally-mandated protection and advocacy system for safeguarding the rights of people with physical and mental disabilities in Illinois.

The nine named plaintiffs, who are from various parts of the state, are asking the court to order Illinois officials to make community settings readily available to people who want and need them. "Federal law mandates that the state develop a plan that effectively helps people with developmental disabilities move into and thrive in the community while receiving the support and services they are entitled to. Despite the fact that Illinois is the 10th wealthiest state in the union, the state ranks at the very bottom in terms of its efforts towards providing communitybased services for individuals with developmental disabilities," says John Grossbart, the partner at Sonnenschein leading that firm's efforts.

The individual plaintiffs named in the suit are Stanley Ligas, Lorene Bierman, David Childers, Isaiah Fair, Adam Kulig, Jamie McElroy, Tiffany McFadden, Alex Tyner and Jennifer Wilson. Five of the plaintiffs--Ligas, Bierman, Childers, McFadden and Tyner--currently live in institutions, despite repeated requests to be placed in small community residential homes. Plaintiffs Fair, Kulig, McElroy and Wilson live at home with parents or other family members, foregoing necessary services in order to avoid being institutionalized because the state of Illinois does not provide sufficient community alternatives.

"The actions of the state result in the unnecessary and unconscionable segregation of persons who deserve and would benefit from life in the community," says Benjamin Wolf, the associate legal director of the American Civil Liberties Union of Illinois.

Marca Bristo, president & CEO of Access Living, says, "As an organization comprised of people with disabilities, we know firsthand that community integration allows people to maintain relationships with their families, work, study, make friends, and share in the rights and responsibilities of American life." She adds, "Segregation in large institutions not only denies people with disabilities these opportunities, but also stigmatizes them and reinforces the false notion that they are not worthy or able to participate in society. As President George H.W. Bush said upon the signing of the ADA, it is time for 'the shameful wall of exclusion' to 'finally come tumbling down.'"

If things are like that in Finland, then they should be changed there and anywhere else it is happening. I'm from the United States. "And your college never supported your developing this sort of skill? Because, if not, they didn't really do you anything of a service." Well, I'm not sure. I don't exactly know much about what that skill is, so I guess in someways I didn't learn that skill there.

But I think some aspects of such a skill don't come about educationally, and I don't have much of an ability to learn it. It probably wasn't such a rigorous college I went to because I managed to get through it. I wonder if grade inflation had a big part in it, and that there wasn't a lot of extensive reading involved in the types of courses I took, which I'm very bad at and continually become worse at.

"But abilities can be developed. And a good college has specialist education professionals who know how to provide the support for such development." I don't know if my college had such support, but not everybody can develop all abilities. I don't know what abilities they can help some people gain.

I don't know how much could have been done for me. My brain hasn't even worked well enough to learn basic things. "Secondly, get your abilities tested" I've been thinking about that and might do that. I've been thinking about what professional to see about that because some of the ones I went to didn't listen to me and missed the point.

Despite the high court's ruling, Illinois ranks higher than all but five other states in its rate of institutionalization of people with developmental disabilities. Conversely, the state spends less on community-based services than all but four other states. As a result, thousands of people who desperately want to live independent lives have no choice but to suffer under inadequate, under funded community services. Many have no real choice but to give up their freedoms in order to receive the care they need.

Institutional care costs more than twice as much as community-based care. In 2002, Illinois spent $115,000 a year for each of its 3,000 residents with developmental disabilities in state institutions. These individuals could be served in the community with 24-hour support for $54,000 a year, according to Pritchard.

For individuals with other types of disabilities, savings of individualized home care versus institutional care can be just as dramatic. According to Gerard Broeker, Executive Director of the Statewide Independent Living Council, a state program that assists individuals with disabilities living in nursing homes the opportunity to live independently in their communities saves Illinois taxpayers about $12 million a year due to the cost differential between home assistance and institutional care. "Community supports should be expanded in Illinois. They provide a better lifestyle for individuals and benefit the Illinois taxpayer as well," Broeker said.

People should be able to choose the support services that best meet their needs, not those that are easiest to provide to a large number of people. Institutional care is a thing of the past. We need a 21st Century approach to this issue. The status quo is unacceptable.

The Institutional Bias in Illinois:Wasting Taxpayer Money and Denying Personal FreedomsDespite the fact that over 20 years of scientific research conclusively shows that people with significantdisabilities are better off in small, family-scale homes, the State of Illinois continues to spend hundredsof millions of dollars to keep these individuals in large, outdated, expensive institutions.The State of Illinois ranks dead last in supporting people with significant disabilities in communitysettings. Rather, 70% of residences for people with disabilities are for 7 or more people. 1In 2006, Illinois spent over $626 million on institutions to operate 9 state facilities and approximately250 private institutions. Over 2,700 individuals are housed in state facilities and 5,272 are placed inprivate institutions of 16 or more people. Total institutional population in Illinois is more than double thenational average. 2How the Institutional Bias Wastes Taxpayers’ MoneyInstitutional care costs more than twice as much as community-based care. In 2006, Illinoisspent over $130,000 a year for each of its 2,709 residents in state institutions.3 These individuals couldbe served on average in the community with 24-hour support for $54,000 a year.4There are federal funds available to states for community care through the Medicaid Home andCommunity Based Services “waiver” program (HCBS). The fundamental premise of the program is touse home and community-based services to reduce the need for institutional services. The HCBSprogram is recognized in all states as an important resource for providing community services. Illinoishas not made good use of this resource and is ranked 47th in the nation in waiver spending.5The Personal Costs of InstitutionalizationIndependent research has shown that everyone can benefit from community-based living, even thosewith the most severe mental and physical disabilities. Studies by well-respected universities conductedover 20 years show that people with significant disabilities are “better off in most ways when they leavelarge congregate care settings for community living in small, family-scale homes.”6 Research alsoindicates that crime rates against people with disabilities are higher in institutions and other segregatedfacilities than in the community. Sobsey and Mansell concluded that the risk of being sexually abusedis two to four times higher in an institutional setting than in community settings.71 D. Braddock et al., (2008). The State of the States in Developmental Disabilities: 2008, Department of Psychiatry andColeman Institute for Cognitive Disabilities, The University of Colorado.2D. Braddock et al., (2008). The State of the States in Developmental Disabilities: 2008, Department of Psychiatry andColeman Institute for Cognitive Disabilities, The University of Colorado.3 D.

Because jobs are being held out as the primary reason to reopen Lincoln Developmental Center , it should be noted that the community-based care industry is a considerable statewide economic engine that employs thousands of people. Therefore, we feel the “jobs argument” is not valid, especially when people’s lives are being devalued. People with disabilities are not material goods, whose “manufacture” entitles people to employment.

"But I think some aspects of such a skill don't come about educationally, and I don't have much of an ability to learn it.

that can happen regardless of IQ (don't know about your IQ and I barely know about mine but I know it's a standard deviation above average) and I encounter the problem quite often, especially at work.

The problem I have regarding the schooling I had (lecture based textbook schooling to be exact) is that I found it really difficult to apply hand-on the knowledge I gained in my courses. In comparison, there are many university developping hand-on problem (or project) based curriculum where you learn exactly what is needed to solve a particular problem (or build a project in the case of the engineering faculty) working in group of 4 with clearly defined roles for each member of the team. the courses themselve are given by appointment with the professor (in his office or in a small lab). Finally, the courses are delivered over a period of either 2 weeks or a month and you work full-time only on a single course during these time period.

If I had that kind of schooling, I still think it would be very difficult for me at first (probably for the first 2 years of a 4 year curriculum) but the end result would be a much better education because I would have a good idea about applying the knowledge.

There are a lot of jobs that are created to claim that people are being employed when the sole purpose of those jobs is to create statistics and spin them to show that their boss's aren't being exclusionary.

Donna, I wrote a post last year about a similar lawsuit in California, which was brought to enforce the state's duty to provide community living services.

Some parent groups argued that the case was not appropriate for a class action because the plaintiffs shouldn't be speaking for institutional residents who wanted to stay in the institutions (or whose parents wanted them to stay there). The Court of Appeal rejected that argument, concluding that the plaintiffs' interest in having more choices was not necessarily antagonistic to the interests of those who preferred the institutions. The case is proceeding as a class action and is expected to be heard in the spring of 2009.

as an autistic adult, i didn't appreciate john mccain's comments one bit. out of the four occupations he listed that autism takes people away from, three i have been seriously interested in. i wanted to be a doctor during junior high/high school, but after a while, the unpleasant sight of actual work caught up with me. i actually have a b.s. in biology and could have been a scientist, but decided to walk away as a career in science wasn't really compatible with me. funny thing about the teacher thing as well, applied for an emergency teaching license for high school biology, never heard back from the school district (apparently, there's a hiring freeze in these parts, so much for that teacher shortage). i never did have an interest to become a lawyer, but i do watch court shows on tv. i say the number one reason many autistics don't have these careers is because the people around them (parents, teachers, etc) tell them they are a tragedy, burden, etc, and lowers their self worth, causing them to become discouraged and not want to be any of those things. i'm sure glad my parents never allowed people to say things like that to me and let me grow up with lots of confidence in myself.

i love your commentary abfh, i've been reading your stuff for a few years and i agree that we need to end the negative views on autism including but not limited to: 'tragedy, burden, gloom and doom', etc. but i do disagree that obama's way is the best and only way to give autistics respect in society. honestly, i feel that some neurodiversity advocates have this mentality that the only way to get true success is via socialism. i don't want this movement turning into a platform for obama and lose the main focus of the movement. i believe there is a middle ground, a way for autistics to become self-reliant without the government's help, and that starts by ending the negative autism rhetoric.

Thanks for the compliments Anon. For the record, I am not a socialist, and I have never claimed that autistics cannot become self-reliant without the government's help. However, we should keep in mind that in a modern society, everyone gets help in one form or another, such as public education, libraries, roads, et cetera. To the extent that our social structure lacks sufficient flexibility to allow autistics to participate in the community to the same extent as others, it needs to be changed. I don't look upon such change as extra help from the government, but simply as a leveling of the playing field.

anon, loss of confidence from hearing people speaking in truthful terms about autism isn't the cause of autistics not having great careers. Most autistics don't have the choices of careers like you do. You won't admit that you have lots more ability than many on the spectrum, and that many of the ones not becoming professionals don't have the ability to do so.

There is no other way for the impaired autistics to become self-reliant besides curing their disabilities. Finding such cures should be something the government should do. Other government help and "accomodations" are useless in achieving equality for autistics.

"There is no other way for the impaired autistics to become self-reliant besides curing their disabilities. Finding such cures should be something the government should do. Other government help and "accomodations" are useless in achieving equality for autistics."

Having read that, I doubt that anything I say would change your mind: you've given up.

"I doubt that anything I say would change your mind: you've given up." What else could possibly make sense in becoming self-reliant besides a cure for what is precluding someone from doing things indispensable for such self-reliance? I really want to know what some of you non-disabled people have to gain in not seeing such improvements happen for those with a mental disability who need it.

"I really want to know what some of you non-disabled people have to gain in not seeing such improvements happen for those with a mental disability who need it."

You pick the wrong target here.

I have a diagnosis of being autistic, dyslexic and dyspraxic. That is, even according to Finnish law, a triad of disability labels. Don't refer to me as non-disabled, because you're way off base if you do. What it is that disables me is not particularly the 'diagnosed issue', but how the system around me deals with that issue, be it the being autistic or whatever. This is why accommodations and supports are not unreasonable to request and expect. You really have pissed me off with that assumption. You're about one stop from being labelled a troll. Do let me recommend that you do not go there.

Your disabilities aren't severe enough to keep you from being able to do things. Some levels of severity of disability can't be accommodated for to ensure an ability. What if there is too much incompetence? What is so great about disability that it should be kept?

"Your disabilities aren't severe enough to keep you from being able to do things."

They were pretty bad when I was younger, and you're not doing yourself any favours here with any of us by thinking you can judge from current performance what someone's performance was like in their youth or in their childhood.

" Well nuclear armed or not the USA is the past, Nuclear armed or not, Russia is the past. Nuclear armed or not, China is the future and do you know why?

It is economics not ideology iand if you started figuring out the way that economics is exercising a complex ew hegemony it would be surprising, cos you have to ask in a command economy who is commanding?"

That makes sense to me. At least as much as I understand it that makes sense.

It seems unfortunately logical to think that the western world would put all our time and energy into correctly solving what ultimately ends up to be the wrong problem.

David asked:

"I'm throwing this open now: is lurker a troll?"

Since I've never heard of any redeeming qualities being attributed to trollism or trolls, I would like to encourage progress rather than expect or demand perfection with the hope of change.

In other words I'd like to refer to the behavior rather than the person by saying that he is trolling rather than he is a troll.

Once someone gets labeled by their behavior and thought to be hopelessly incapable of learning, other people tend to focus so much of their time and energy on managing that persons behavior, opportunities for them to learn are often missed.

Yes. Serious question. Just based on a need to know if there's a long-term history of antipathy or other negativistic behaviour, such as would be associated with that sort of person. However, see below.

"Since I've never heard of any redeeming qualities being attributed to trollism or trolls, I would like to encourage progress rather than expect or demand perfection with the hope of change."

I did that, but did not see much open-ness to reconstruction of his/her situation. My hope is that lurker is not a troll, but the assumptions being put forward are very similar to those put forward by people already known to bait autistics (e. g., "Your disabilities aren't severe enough to keep you from being able to do things."). My own experience is that the considerable difficulties that I still have as an adult were accommodated by the universities I attended, and by the one in which I am a Master of Education. So, having already been told that these difficulties existed before and still do, Lurker still assumes their non-existence, which is a tactic used by those referred to as 'trolls' as a baiting tactic.

"In other words I'd like to refer to the behavior rather than the person by saying that he is trolling rather than he is a troll."

Which is why I thre it open... in order to find out first. I otherwise prefer to deal with what someone does rather than what someone 'is'; so I do know where you're coming from here.

"Once someone gets labeled by their behavior and thought to be hopelessly incapable of learning, other people tend to focus so much of their time and energy on managing that persons behavior, opportunities for them to learn are often missed."

Absolutely true. This is a failure in clinical and medical settings, which one would hope would not appear in educational ones. Personally, based on my training, I disagree with Lurker's assertion packed into this sentence: "What else could possibly make sense in becoming self-reliant besides a cure for what is precluding someone from doing things indispensable for such self-reliance?". Lurker has obviously not heard of the notion that nobody is entirely independent... we're all interdependent.

"So, having already been told that these difficulties existed before and still do, Lurker still assumes their non-existence" I didn't say they didn't exist. I was denying that such difficulties were severe enough to prevent you from having a career. I think it's so typical when people put words in someone's mouth.

"Lurker has obviously not heard of the notion that nobody is entirely independent... we're all interdependent." I think I'm aware of what interdependence you're referring to. But that notion of the impossibility of entire independence, can't be sanely construed to mean that independence isn't important and wanted by people.

I don't want to condone the idea that independence is a privilege and not something that all people are entitled to. Who would be ok with not being able to independently do basic tasks and work to earn enough to support themselves throughout their lives?

"Lurker really needs to understand the fallacy of his/her notions of what disability is, and the need for cures." I'd rather proceed from the reality view of what disability is, and from the ideals that are based on the cries that come out from people's spirits against dependence and disability, and in deep want of what others have, to assess the need for cures.

David, how many people do you think would agree with your ideas on disability and cures? What is so bad about cures for disabilities? I'm portrayed to be a monster, but deep down, all I ever wanted was what others take for granted. If I'm a creep, I think it's because I let myself succumb to my anger aroused by the chauvinism and greed of people, and the oppressive attitudes of those like you.

“I didn't say they didn't exist. I was denying that such difficulties were severe enough to prevent you from having a career.”

In fact, without accommodations, the difficulties would have gotten in the way of my studies, which is the point that I am making. I’m surprised that this point went past you, since I was very explicit about it.

“I think it's so typical when people put words in someone's mouth.”

I’m not putting word in anyone’s mouth. You clearly referred to me as non-disabled. Will I quote the post in which you did so? As someone who has experienced lifelong difficulties that – in non-supportive contexts – have led to disability, being called non-disabled does actually offend me.

“I think I'm aware of what interdependence you're referring to. But that notion of the impossibility of entire independence, can't be sanely construed to mean that independence isn't important and wanted by people.”

My point is that independence cannot truly be achieved: we all co-exist with each other with varying degrees of interdependence, and – like it or not – that is how it is. I can do nothing to change that. We all have to depend on each other. Total independence is a myth promulgated by individualistic cultures. I do not know anyone who does not, to some extent, depend on someone else for some aspects of support. I would agree that self-determination is important, and the point of the work I do (when I get chance)

“I don't want to condone the idea that independence is a privilege and not something that all people are entitled to. Who would be ok with not being able to independently do basic tasks and work to earn enough to support themselves throughout their lives?”

I agree that it is absolutely essential for people that they are able to perform tasks as independently as possible and thereby earn enough to support themselves; indeed that is what I myself want desperately. But I also know that -without proper support - that isn't likely (and I know that - with the Finnish model of understanding disability as it currently is - it won't be likely for some time). On the other hand, this doesn't necessitate a cure: it necessatates other things, such as a change in the organisational culture of (in my case) the Finnish system of support, which is only happening very slowly, if it's happening at all.

“I'd rather proceed from the reality view of what disability is, and from the ideals that are based on the cries that come out from people's spirits against dependence and disability, and in deep want of what others have, to assess the need for cures.”

The medical model of disability is not a reality view. Even medicine is accepting that now. Disability – and what brings it about – is a much more complicated issue than ‘something is wrong with this person’, and this is the viewpoint currently used in understanding disability as a phenomenon.

“What is so bad about cures for disabilities?”

The fact that disability isn’t just about something that is sited within the individual, maybe? Disability arises from the way in which individual factors and societal/physical factors interact with each other. I’ve worked with blind people who do not want cures. I’ve worked with deaf people who do not want cures. I’ve worked with autistics who don’t want cures. All they’ve wanted is some level of support that enables them to achieve realistic goals – and this is what part of the job I trained up to do involves: assessment, setting up support plans, implementing them, evaluating them and revising them to suit the person concerned.

“I'm portrayed to be a monster, but deep down, all I ever wanted was what others take for granted.”

Who called you a monster? I didn’t. I asked others if you were known as a ‘troll’, and I’ve explained already that we have had many of that sort of person coming baiting us, and I’ve given an example of why I needed some clarification (these days, I see no point debating with trolls, because they have no wish to debate – they exist just to derail).

“If I'm a creep, I think it's because I let myself succumb to my anger aroused by the chauvinism and greed of people, and the oppressive attitudes of those like you.”

You are the one calling yourself a creep; I did no such thing, and nor did I perceive you as such. As for me having oppressive attitudes… you’re talking to one of the people who served on a committee for the empowerment of autistic people in Finland as the consulting member on Inclusion, Special Education & Educational Psychology (our job was to find ways in which we could break out of the place that a very restrictive society like the Finnish one keeps us): someone whose aim is to find ways the enable people to function better in society with the co-operation of society is not someone who holds oppressive views. Those thinking purely in terms the medical model, however, may well hold oppressive views (e. g., be cured or be damned).

Again, since I have to be very clear for you on this (speaking as one who has almost constant need for clarification to another who evidently has the same need), I am not suggesting that you yourself hold oppressive views (at least, in any deliberate way; although there are much more useful and helpful ways of seeing disability that purely in terms of medical models and the cure/no-cure perspective).

However, unless you are prepared to at least try to understand the position I'm coming from - rather than to (essentially) brand me as 'oppressive', I'm damned if I'm going to bother talking to you. I've changed a lot in terms of how I understand disability over the years, going from the same 'cure' stance that you take now. The difference between us seems to be that I was willing to shift my viewpoint. I understand that shifting viewpoints is not easy, but - I'd say in your case (as it was in mine) - it may be more beneficial to you to stop seeing things like ability and disability as things that are set in stone.

They're not.

Pure and simple.

Even issues like intelligence - once viewed by most psychologists as being predetermined - are now known to be affected very much by culture, and what the prevailing culture deems valuable enough to be seen as signs of intelligence.

I think you really need to be assessed by someone who isn't so blinded by medical models of disability, who can identify the things you're good at and help in developing those skills particularly, because it is those skills that could be used to circumvent the things that you're not so good at.

"Since when was truth decided by a vote?" What makes your opinions truth? Especially when they involve ideas for policy that will affect many people. When I referred to you as non-disabled, I didn't think I was that clear on the fact that you have disabilities.

"As someone who has experienced lifelong difficulties that – in non-supportive contexts – have led to disability, being called non-disabled does actually offend me" I wonder why it would offend you, considering you now say you had "difficulties" that without support became disabilities. With that premise, how many disabilities do you have now with the supports you currently receive?

"we all co-exist with each other with varying degrees of interdependence, and – like it or not – that is how it is. I can do nothing to change that" I think someone should change that then, whether you have any motivation to do so or not.

"On the other hand, this doesn't necessitate a cure: it necessatates other things, such as a change in the organisational culture of (in my case) the Finnish system of support" Your own example isn't sufficient to show that a cure can be obviated. What about the people who can't read, write, or speak well, and don't have the abilities to do basic tasks? Accommodations aren't going to ensure success in such cases.

"I agree that it is absolutely essential for people that they are able to perform tasks as independently as possible and thereby earn enough to support themselves" It doesn't seem like you agree considering your other statements trivializing independence.

"indeed that is what I myself want desperately. But I also know that -without proper support - that isn't likely (and I know that - with the Finnish model of understanding disability as it currently is - it won't be likely for some time" Why does this come back to yourself again? It's not all about you and what you want, which I doubt you can't obtain.

"The medical model of disability is not a reality view." How can I believe someone who denies medical science which has researched the biological basis of disability? "Disability – and what brings it about – is a much more complicated issue than ‘something is wrong with this person’" How complicated does it have to be aside from its bodily/neurological basis? It doesn't take a doctor or other professional to realize someone is unable to do something when attempts are made by the unable person, even though others can do the task. I like to use a little common sense.

"I’ve worked with autistics who don’t want cures." Just about the only ones I ever heard of that don't want cures (not even for others), are the super-intelligent ones who hardly have impairments. I don't consider that representative. "All they’ve wanted is some level of support that enables them to achieve realistic goals" Who is to define realistic goals for the disabled to accept?

"you’re talking to one of the people who served on a committee for the empowerment of autistic people in Finland" I wonder which autistics you empower, considering you oppose cure even though some autistics want that.

I am trying to understand the position you're coming from. But I won't change my viewpoints. "it may be more beneficial to you to stop seeing things like ability and disability as things that are set in stone." I agree, and I don't see those things set in stone anymore, and I think that with technology coming so close to being able to cure mental disabilities and augment people's abilities, it would be sad if the opportunity to stop the inequalities in ability was ignored.

I think a lot of the social model of disability, and the "intelligence is based on what culture values" ideas, arise out of the "self-esteem" movement, which is purported to be based on making people have inflated self-esteem regardless of ability (which doesn't work), and pretending that success isn't dependent on accomplishment and that differences in ability don't exist. That movement has been a disaster and I think it compels children to forgo true satisfaction and esteem and abandon the hard path to those wants.

I need to see a professional who doesn't deem my problems as "emotional" after asking me irrelevant questions, or who prescribes me off label anti psychotics under false pretenses. I at least want someone to identify my disabilities, and who will try to increase my abilities to whatever extent currently possible. The last thing I need is some professional telling me that only society is preventing my abilities, and that my solution is to have assistants hold my hand through the tasks I want to do, while many other tasks and endeavors will be unavailable to me. I want to be able to do what just about everyone else does without someone having to incessantly help me with it, as well as the freedom that comes with such independence.

Despite me not liking McCain's autism remarks, Obama scares me even more. Obama's words could come out to say "autistics are helpless without government help", which can lead further to the "autism is leeching the government" stereotype as well as some other negative long term ramifications.

Obama is also against the born alive act, which means he supports babies that were born due to a failed abortion should be killed anyway. Why is that important? If Autism Speaks and co. get their autism prenatal test, of course, we'll see autistics being aborted prenatally, and I don't expect Obama to save the baby.

Thank you, David. Even if Lurker wouldn't accept the points you put forward in your comments, those comments greatly helped me. In short, they gave me hope.

See, I went to college twice. Both times dismal failures. I didn't know how to get support services, and I was insisting on trying to do everything myself. I didn't really understand anything about the nature of my difficulties--it wasn't until a few months that I began seriously suspecting that I might have autism. All I knew was that I was having difficulties. It seemed hopeless to me that I would ever get a degree. I ended up giving up on that.

But recently, an experience at an aquarium re-ignited a passion I've had. I was in love with what I saw at the aquarium as usual, and then I saw a display asking for volunteers. That set motions whirring in my head, I started thinking, "Hey, I could be working with this stuff," and now I find myself surprisingly looking at acquiring a marine biology major. This is the first time I've really felt a strong desire to return to college to get a degree this time around, instead of just scattered interest in assorted topics that didn't really drive me toward a career.

The point being, even with this unexpected level of passion, I was wondering if I could even do it. And then I read your comments. And they gave me hope. I probably will need a fair bit of support, but it's looking a lot more doable.

Of course, I've got a lot of things to do in order to realize those goals. I don't even have an official diagnosis (I'm keeping my mind open that it might be something else than autism that's been impairing me, although I've been finding so many common experiences with the autistic people who've been writing about their own experiences that it's scary), for example, and that would most likely be important for securing support services. And so on. A lot to do, but for the first time I've really felt like getting my ass in gear.

"Thank you, David. Even if Lurker wouldn't accept the points you put forward in your comments, those comments greatly helped me. In short, they gave me hope."

In that case, the time wasn't wasted: thank you for that!

"And then I read your comments. And they gave me hope. I probably will need a fair bit of support, but it's looking a lot more doable."

Good to hear. I think much of it also is about pacing yourself... bit offmore than you can chew and you will give yourself a problem, but it's possible to see what your limit is. This is where an assessment is useful, for sure.

"I don't even have an official diagnosis (I'm keeping my mind open that it might be something else than autism that's been impairing me, although I've been finding so many common experiences with the autistic people who've been writing about their own experiences that it's scary), for example, and that would most likely be important for securing support services. And so on."

Yes, absolutely. I'd recommend getting the most official thing you can get that meets the requirements for the insitution you're dealing with. It should detail the elements of the diagnosis, including any specific learning difficulties you might be experiencing. It should also detail a number of possible supports with ways to modify them if need be (for reasons of economy): one cannot expect that the system will bend over backwards to accommodate, but reasonable accommodation is expectable... the idea is that they level off the playing field somewhat in order to disadvantage you less.

"A lot to do, but for the first time I've really felt like getting my ass in gear."

Yes, it is a lot to do; but it's worth it in the end. I wish you well in the whole enterprise, and hope that you managed to get somewhere successfully with it all.

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About

This blog began its journey in May 2005, countering misinformation and stereotypes about autism. The title was chosen to make clear that autistic people are not changelings or aliens, but are human beings who have just as much right to inhabit Planet Earth as anyone else.
Now, as it reaches the end of its five-year mission, I would like to thank my readers and everyone who is working toward understanding and acceptance. May you find blessings wherever you go.
— abfh, May 31, 2010